There are times I direly miss leaving my thoughts online for all those readers who supported me through the darkest moments of my life to date. I remember the feeling of support I got as I struggled to find meaning of some long lost experience in my life and relate it to the struggles of my new life with cancer. The was no tangible touch of the human hand but the caress of the hundreds of human minds who thought fondly on my stories and wished me hope as I struggled with the ramifications of chemo, drugs, viruses, unheard of tricks of a new immune system and the shadows of the mind which accompany cancer. Over the last month I have had to cope with some of these unpleasant moments again. I am happy to say I don’t have any new cancer or relapse as far as I know but my path has been not as smooth as I would prefer.
A few weeks back I started noticing some extremely itchy little red lesions. Essentially little bug bites. In fact they were in the exact spots I had mosquito bites last summer. There were a few in memorable
Spots on my hand and elbow. Last summer these bites were pretty intense. Sort of like a little baby who gets a bite. Their immune system overreacts and I figure my new system was doing the same thing. I got pretty aggressive about covering up and using bug spray (to Brooke’s dismay, a cancer risk). But I still got a number which is common in Alaska. So when the first few shows up I was a bit perplexed.
I had a follow up with my oncologist to get my on going immunizations (with the transplant I lost all my previous immunity). I only had a couple lesions at the time and rightfully he wasn’t impressed. I wasn’t even really at the time. Over the next week though I developed another ten or so and they were ridiculously itchy. I started looking stuff up. As we all know that is a bad thing to do anytime but seems even worse as a doctor because the worst case scenario always seems the most likely. We are trained to work backwards as such. The possibilities seemed to point to some new cancer or GVHD which I am not excited about and skin GVHD is reportedly one of the worst forms of the response.
I finally couldn’t sleep with the itching and the anxiety and I went to get a biopsy. At the same point I picked up a virus from the boys. This only made my sleeping more troublesome and my days harder. I had even volunteered to help my group out covering a night at the hospitals which at the last minute I had to beg someone to do for me as I thought I might keel over from fatigue which seems to be the worst part of getting sick for me these days.
The incessant itching continued to hamper my sleep and psyche. I was given some topical steroid which helped for a short period but I really caved and just took some oral prednisone to get a couple nights of sleep (not always a great idea because the mind races and my struggling immune system was suppressed further unsealing with the virus). I entered a week of work worn out and a bit dejected. As I always wear my mask and gown I at least felt like I was protecting my patients now and not just myself. After a few hours with a mask on though a runny nose is not very fun.
The good news was that my biopsy came back as a bug bite or similar reaction. The problem is no one seems to know what or why it is happening. We don’t have many bugs in AK in the winter (even with global warming) and we don’t have bed bugs to our knowledge given the fact Brooke has no bites and neither does Finn who spends a good portion of each night in our bed lately. The best we can figure is that the immune system cells of the skin do carry some memory ability and probably a virus I was coping with prior to these showing up sparked a response. The current URI has not helped. I have researched all my sources and can’t really find any reports of this though which is troubling. Seattle didn’t have any answers either. So on I plug. My sleep sucks and despite multiple home remedies the dam things won’t go away. My sleep has suffered and not since my little bout with BK virus have I felt so run down.
There is however a bit of light. As with most of my posts I will find some positive to build on. I am writing this on my phone as my family whisks towards Steamboat. Yes, after three years away from my true hometown I am getting to go back. I have not been on a plane to anywhere other than Seattle or back to AK on two years. The fact I am going home to a community which was so supportive not just to my parents and brothers who still live there but to me who has left over 15 years ago is heart lifting. I am tired, I am a bit grouchy, and I itch like mad but Ian about to scratch an itch which has plagued me since I heard the words leukemia. I get to go back HOME!
I can’t help but cry a little as I think of it. All the love, the positive wishes, the outpouring of care for my family will never be repaid. Yet in some way my return (maybe just in my mind) is some tribute to the strength of that community which my parents and brothers have helped foster. I look forward to seeing old friends. To showing my boys some of my old spots. To creating new memories which I thought for so long may not happen. The saying is you can always go home but really never go “home”. That may be the case but this sure does feel good despite my issues.
Head Up, Heart Strong. I need a cure.
Sorry for any horrible English errors. Writing on an I phone is no easier than it was back in the hospital.